Kathleen Conway, a psychotherapist, developed lymphoma as a graduate student, and breast cancer in her early forties. Married with two young children, she wrote a remarkably honest story, Ordinary Life, of her reactions to having a mastectomy and chemotherapy. The book details her anger, her depression, and the feeling of having lost her “ordinary life.” Written day by day, it describes the daily hassles and stresses of carrying on with her family’s life turned upside-down. The stress was hard for her husband, who became fatigued, sometimes despairing, trying to support her while taking care of the children and working at his job. Kathleen was shocked when she read her diary, written a year earlier during her illness.
Certainly, I set out to write the truth about my cancer while I was still in its grip. I was passionate in my resistance to telling the story that other people seemed to want to hear—–of lessons learned, of cancer as a transformative experience. But having told my story, I now find myself startled by its fierceness, its raw and unrelenting character. I almost wish, when I read it over, that it had left me with more of a feeling of transformation.
When the experience of cancer and its treatment is over, it is easy to “rewrite history” and think of yourself as having been more wise, mature, and adaptive than indeed was the case. As with childbirth and other traumas, in retelling it you tend to color the experience as you want to remember it, and tell it to others in more acceptable terms. In fact, Kathlyn Conway said, “I doubt that I could write this book today
[nineteen months later]. I no longer feel as raw as I did then.Just as history books are written with the specific slant of the particular historian, so it goes with personal stories of illness. An account written as a daily diary is likely to be the most honest. And over time, some transformative ideas stay with survivors, some good and some “troublesome.” These notions are so common, you could almost call them universals (although absolutes about anything are not possible, especially in relation to human emotions).
Brooke, had a mastectomy at mastectomy at fifty-six, followed by adjuvant chemotherapy (meaning that it was given as part of the initial treatment) for early breast cancer. She continued to work as an interior designer during the chemotherapy, despite being tired. She initially had a hard time adjusting to her “new body” and joined a support group for breast cancer patients and survivors. She found it helpful hearing others describe how they got past the hair loss and adjusted to wearing a wig. She began an exercise and diet routine to keep her weight stable, since women gain weight during chemotherapy and often find this an additional problem to deal with. Though she hardly wore makeup at all before her bout with cancer, members of her group suggested she wear more makeup and brighter clothes, both to keep up her spirits and to give her pale look more color. Her husband was very supportive throughout her treatment for cancer, and they both felt that they became closer because of the experience.
At the end of a year, Brooke’s appearance and energy level had returned to normal, but her psyche had not. As the time approached for the landmark one-year follow-up visit to her doctor, Brooke recognized that she had suddenly become anxious and irritable and was sleeping poorly. She said, “I feel well, and I usually don’t worry about my health. But when the flu was going around my office, and I started feeling achy all over, I thought, What if it’s not the flu? What if the cancer’s come back? I worked myself into a real panic. Then I started wondering, What if they didn’t really get it all? What if I’m not cured? My husband tells me it’s all in my head. There’s nothing wrong with me, and I’m just obsessing”. He says, “You beat it. Be grateful, and move on.” “But I’m not sure. I called my doctor, and she said it was nearly time for my next checkup so why didn’t I just come in now? I scheduled an appointment for next week, and I haven’t been able to sleep ever since. All I think of is: What if they find something? The crazy part of this is: I feel fine. My life is great. I’m just so terrified that at any moment I could lose it all.”
Brooke’s story exemplifies a common phenomenon. It is expected that patients would be jubilant on finishing treatment, in fact, the opposite sometimes occurres. They can have a paradoxical increase in distress just after treatment, related to a feeling of vulnerability. Two main factors cause this new and unexpected anxiety: the fear that the cancer could come back now that they were without the protective effects of treatment, and the fear that they were not being watched as closely by their doctors.
Most cancer survivors typically experience what Brooke went through, wondering, “Did I have cancer, or do I still have cancer?” Another cancer survivor put it this way: “I think I’ll never feel as confident about my life, myself, and the future, as I did before I had cancer.” This common feeling in survivors is called the Damocles syndrome. According to the Greek legend, Damocles, a courtier to the tyrant Dionysius, the Elder of Syracuse, extravagantly praised his sovereign, who invited him to a sumptuous feast. However, during the entertainment, Damocles looked up and saw that Dionysius had seated him directly beneath a sword that was suspended from the ceiling by a thread. For Damocles, this sword was a symbol of the precariousness of life and how one’s fortune could shift from being in favor at court to falling out of favor, causing the sword to fall down one’s head. For people who have had cancer, that sword represents the frailty and precarious nature of life itself. They continue to believe that the threat of recurring cancer and consequently, the threat of death, is always looming over them.
Usually, this fear slowly recedes as the time from diagnosis and treatment increases. But the fear exacerbates just before follow-up visits, scans, and tests for cancer.